I guess part of what I am saying is that in my experience healthy people don't want to hear from me when I am sick. Event close relatives and friends. Should I get new friends? Or is this always going to be the case and cfs is a lonely disease?

I find that suffering alone is a terrible terrible thing. But maybe I just have to accept it.

Hi

I feel the same, when I'm feeling bad there is no one to help, I live alone and do find it isolating, I think I have done the same in changing my expectations of people now after many disappointments so it hurts less but still does not make life any easier or less lonely, I guess I don't really have any advice but think a lot of us are in the same boat, its a shame we cant all live nearer to one another to be there for others when times are rough.

Luna x

I have heard great things about a book called "How to be sick" by Toni Bernard. Sort of a Buddhist guide.

We all have different struggles and experiences when it comes to family. I'm so glad that I have found a way to survive financially without them because I can't be around them. It's too hard to not be believed and have them all be intentionally cruel. At least alone I have less stress.

Everyone around me knows I have a chronic illness. Therefore I don't say much. If I'm having a tired day I just opt out or go watch if something is going on. The grandkids have never known me any other way so I'm the Gramma that reads to them and does crafts, not plays baseball. I've even stopped saying much about testing and such. I think for folks it can get old. Luckily everyone knows to just ask me along and not to be upset if I can't manage being there and understands. It's about communication. I tend to be introverted anyway so it doesn't much bother me if I don't see other people but maybe twice a week. If you're an extrovert, this could be hard on you, sorry to hear it.

Another suggestion is to learn to do your own thing. Find a hobby or something that interests you. There are plenty of things you can do that don't take much energy; bird-watching, knitting, gemology to name a few. These types of things you can put down when you're not well and pick them up again when you feel better.

It's hard for me to ask for help but I'm trying to do that when I really need it. That might be a ride to a doctor's appt or help around the house. I'm currently building up the courage to ask someone to help me clean my fridge because it is too painful for me to bend over or get on my knees.

You are not alone, we are all here with you.

I think this is ONE of the most difficult parts of living of CF. It should work out when you tell someone you have CF one would expect empathy etc. My husband says maybe they just do not know what to say. He believes that it hurts them also to see me in so much pain. Something to think about. Thank you for sharing.

I feel the same. It's a very isolating disease. HERE on dailystrength is the best place for me to go when I'm so lonely, at the very least, there's people who understand how i feel and I can vent about how it is to live with CFS.

I know exactly how everyone feels. I live alone also, and I have tried to explain what this illness does to me, but I get a few phone calls to "check on me" from a couple of people who haven't distanced themselves from me. What I really want is for them to include me in their lives somehow, come and pick me up and bring me over to their home for an occasional dinner, or take me out to dinner with them - something like that. They really don''t understand how difficult driving is for me now, and even if they did, they seem to not have room for me in their lives. I really don't see how hard it would be to help a friend out once in awhile by visiting or helping me get some fresh air. But all I do now is try not to be bitter, and rest because I have to, not because I want to. Holidays are still awful, tho. I cry because I remember how my holidays used to be - filled with friends and family and fun.

When I am very I'll, I just want peace, quiet, and my bed. I am now living alone and I am actually enjoying it. When I'm having a bad day I can just go to bed. When I'm having a good day I can do my hobbies and go out if I am up to it. I have been I'll now for 15 years, and I do tolerate the bad days better than I did in the beginning. You'll find a way to get thru the tough days and we probably all have alot of differences in what we prefer. I am just thankful that my children are now adults and I don't have the stress of trying to raise them when I was so sick. We are all here for you, please don't feel like you are alone. Feel free to vent.

My first thought was that I don't seek anyone out. That I just go lay down more often and am very restful the rest of the time. That is true. I truly do need to go lay down if I'm crashing enough, or sometimes as part of a good day.

Then I thought of why I don't seek out help. It's because I know better than to think I'll get it.

I can now expect that in the winter I won't get enough to eat. I won't be up to making myself something to eat for 3 meals in one day. I know I will run out of frozen meals before I'm up to grocery shopping. I know that I will go through periods where something I'm wearing is not clean because I'm too worn out to do laundry.

I know this because it's happened the last 2 winters. I would never have let that happen to someone I live with when I'm healhy. At least not the food. It is wrong to let someone starve in a house full of food. It is wrong to get yourself lunch and walk right past the person on the couch asking for food and say that you are just too busy. (Because I couldn't get it myself.) I feel very resentful about that...and angry...and bitter.

I too would love for people to stop by and take me places more. I don't feel right about asking because I can't pay for gas. However if someone is going somewhere I will sometimes ask if they mind picking me up and letting me tag along.

I want to advise that you directly tell people things like, "I really need someone to talk to, do you have the time?" or "I'd like to get together with you sometime, but I'm not up to driving. Would you mind picking me up?"

Good advice, right? But how hypocritical of me. I'm so concerned about being rejected or a burden that I rarely do this myself.

I have a friend that I used to talk to regularly. She'd come often and visit. Then she started dating this guy. Now I understand the new romance thing. Or even the we're a couple now thing. But now that I haven't seen her in a whole year and she has to get off the phone within 10 minutes.... I can't help feeling hurt. I can't help thinking that she is avoiding me.

As far as new friends, yes, that is a great idea. It doesn't mean you can't keep your current friends. The great advantage of anyone new is that they'll accept you how you are now. You won't seem any different because they always knew you just as you are. It doesn't matter if they have a chronic condition or not. It just matters if you like each other's company. That feels good just to type out.

And for when you can't read, can't watch t.v., and aren't sleepy.... Things to listen to like books on tape or music might be nice. Sometimes I like that and sometimes it drives me a little nuts if I'm crashing. I like to daydream. I like to think of favorite stories or movies and play out in my head like I'm one of the characters. Or I make up my own. I know it's just daydreaming, but it's like watching movies in your head. Best part? You can do anything you want. You don't have to be the person glued to the bed. You can sprout wings and fly. You can win the Olympics. You can go hiking. Stories are my favorite escape. Dreamed, read, written, watched on Netflix....just love the stories.

I came to this site very recently and have been pretty buoyed by the positivity but this topic is just too sad for us all. It is, I think, because cfs is just so misunderstood by those who have never had it that we are left feeling so lonely, even in a house filled with people. I can sympathise and empathise with everything being said on here having been diagnosed almost seven years ago. I hope one day to be able to work again, look after my house and family again and be a friend to others. Will that happen? I don't know. But I do know that I have also felt left out by others, and abandoned by many. Recently my two sisters went on holiday to Lanzarote without even asking me if I wanted to go. (I live in Scotland, and Lanzarote is a three and a half hour flight) I don't know if I could have managed it physically or financially but it would have been nice to be included in the discussion. Nobody phones me any more and certainly no-one visits. I do have a car and can drive some days but have nowhere to go. I can't commit to any groups or clubs because I have no idea how I will be from day to day or week to week. No doubt this is the most isolating of illnesses. I live with my two sons, aged 20 and 19 and they do try, but I could go for even weeks without a shower or bath, clean clothes and bed. It is as if they don't see it. Perhaps the problem is that I have always been the doer, the instigator and organiser. If I ask for help with something specifically I will get it but the thing is, what I would really like is if something was done for me without asking. I know, it sounds bizarre. I think I want to know someone else is thinking of me and willing to take charge. I just don't have the energy! What is the answer? I don't know. I do know that the people on here at least understand and that is a comfort. More than that? Just keep trying to get better health, manage things day to day and perhaps even do a bit more asking for help and contacting others till they realise that we are still here and still need others in our lives.

Hi

I want to say so much in response to this post.
But I cannot stop crying.
I am so lonely and so identify with all of it.

Cindy

Hugs to you Cindy.

Sometimes it's facing the truth when we read something that is just like what we go through. Sometimes it is finding out that someone understands where we're coming from...without having to explain it all first. It hits so close to home.

Cynwicklow, I really hear what you are saying. Yes, CFS is a very sad disorder; I think there is a real grieving period we all have to go through, and I think there is real value in doing that.,it's not easy, but necessary in order to accept the illness. I live alone and am very scared about what might lie ahead for me, but I am trying to take it one day at a time. Hugs, Anne